Friday update

Today was like I was a basket ball dropped from a very tall damn. Started off briefly on a high then dropped to the bottom, bounced back up again, to the bottom, back up and so on eventually settling into a quiet calm.

Some parts of today have been absolute hell, others, very emotional and uplifting.

I only exchanged a few words with Dennis, he has a bad head and needed his bed, I wish I’d been there to sooth him though, if it was anything like the headaches I get, he’s have politely told me to go elsewhere!

Caroline did an absolutely awesome job with a great massage and reiki but more so with her understanding and friendship.

Robin gave me the left overs of his dinner which I had all on it’s on for my supper and it was gorgeous.

House peaceful though, I don’t much like empty. Watched an episode of Break Bad, not many to go now, 8 I think.

I went to the pharmacy earlier and picked up some sleeping tablets … to help me sleep.

This weekend I am taking a break from dealing with anything stressful, all light hearted stuff from now on .. until Monday which promises to be mega stressed but, that’s Monday!

Rock Bottom

The Care Manager for Zoey (social worker) decided Thursday morning that there was no reason to have a discussion about discharge as she had barely started her safeguarding investigation.

Though they try to deny it, this is effectively ‘them’ saying that they believe ‘we’ did something to harm Zoey and that’s why she ended up in hospital.

This is one of the most horrible things I have ever had to experience. I am trying really hard but I cannot see any good in what they are doing, it’s vindictive, it’s nasty and it is plain wrong!

Each day they seem to twist the knife in me more. I am fighting for what I know is right for my daughter and I am being made to feel like some sort of sordid criminal.

This should be one of the happiest most positive times of my life yet I feel so horribly low. No organisation or individual should have the power to do this to others, it is one of the worst cases of abuse of authority and it’s happening to us.

Just about the worst part is, none of them are telling Zoey they won’t let her go home, she genuinely thinks they’re going to let her come home soon. We all here feel that she should be home soon but, I am now convinced it is unlikely she will be home this year. I just keep seeing her optimistic face as we discussed her coming home the other day, she was so excited and looking forward to it. I am sickened that I am going to have to be the bad guy and tell her it isn’t going to happen and I have no idea when it might, if ever. I have totally failed my daughter. Anyone who says otherwise doesn’t understand parenting at all.

Greed and why it damages the country

The Government are totally right on one thing, earning boosts the economy, on this basic fact there can be no dispute. Getting folk off benefits, including tax credits, and self sufficient in employment has to be the way to go but, he has it wrong, terribly wrong, damaging to the country wrong on the level of income people need to really make this a healthy top to bottom country.

The notion they have of making the rich richer and expecting it to filter down requires a mindset amongst the wealthy which simply doesn’t exist.

What is required is to make those at the bottom wealthier, not rich but they must have expendable income. Look, it’s obvious, anyone can understand it, except the government it seems, it’s economics.

If you pay Joe Public minimum wage, even a living wage and it just about covers his living needs so, his everyday costs such as utilities, rent/mortgage, TV and so on then he is no longer a burden on the country but then, he is also not a financial contributor either as he either pays nothing or very little in tax and a small amount of VAT.

Pay Joe Public more than he needs and he will spent it or save it. If he spends (most likely) then he will need product to buy. The more there are like our Joe the more product will be needed, the more workers will be needed to manufacture and sell that product. This creates employment. If those new employees also have more than they truly need to cover their costs then they too buy product which requires more workers to provide it, deliver it and sell it which requires more workers … with all this selling, companies make larger profits even on top of those extra wages, larger wages means more tax revenue.

The result is … huge extra tax revenue for the country, unemployment right down, benefit costs slashed, huge increased profits for companies and shareholders … everyone wins from this.

There is only one reason it doesn’t happen and that word is ‘greed’

Zoey 27 October

Firstly, we are relying on those letters from you dear friends and family. We need to disprove what didn’t happen. There is an assumption floating around that Zoey wasn’t care for very well at home which was behind her presentation at the hospital and possibly her UTI.

They are trying to play down any thought that it might be an accusation but, at the same time they do describe it is a fact finding mission to make sure that the environment and care at home is suitable for Zoey. Now, to me that’s clearly saying they don’t believe the care she was getting was good enough but apparently they feel the two things are not the same.

This is why we need your input to tell them very politely, with great respect and understanding, what you think of our ability care for Zoey, whether she seemed happy at home or not. I am not going to tell you what to say, I want this to be your own words. Obviously if I thought you were going to write something negative I’d not be asking but, you must decide what you send in.

We spoke with the Care Manager the other day, she made it clear she wanted to reduce the budget Zoey currently gets, the hospital are horrified, they want it increased. I’ve asked nicely that whilst they argue it out can they not leave Zoey vulnerable where she is. There were other things sickening about what she passed on but I don’t want to mention them here because it will make this too long.

It is clear that the hospital did break the law on the 72 hours discharge rule. They tried to cover it up and fudge it but basically they forgot to pass the song book around and were not operating from the same one. I am prepared to let that go because of the concessions I achieved this morning.

I was in meetings from 10 – 1:15 both in person and on the phone without a break. They have agreed to have a professionals meeting on Thursday during which they will agree a discharge date. I have assurances from the hospital managers that they are going to fight our corner. I’ve told them I am willing to take them at their word. I honestly believe that dealing with things efficiently if informally is always quicker than going through official channels. They all indicated agreement that Zoey most likely is now ready to go home with an improved package and they will insist on the Care Manager providing that in a timely manner.

They have voice this is, in their way of thinking, next week but, reading reactions and body language I suspect we are looking more at the following week. For reasons I am not discussing in public, that is not the best timing, next week is far more preferred.

So, pens to paper, they must have these letters by Thursday morning at the latest. It might still be useful after that but by then would really make a difference.

Zoey Update 26 October

The hospital said no … actually, one consultant said no, one who has barely met her at all who is going on advice from what he has read of what she was like at her worst when she was admitted.

I can report that Zoey herself now seems to be 100% back to being Zoey.

That said, she is deeply unhappy because she cannot understand why they won’t let her go home. The consultant is taking her unhappiness as a sign of depression and wants to persist with medication for depression! So, try and solve her unhappiness there by medicating so she what? Gets used to it there and just accepts it? I don’t think so, you aint experimenting on my daughter mate!

There is a lot more I could write but I suspect a clearer picture will emerge tomorrow so I shall wait until then.

Keep sending those letters in if you feel inclined, they need to know at the hospital that we are a strong and loving family and that there is no evidence at all for any question mark over her safety at home.

‘Dennis’

For over 5 months now, me and Dennis have spoken every day. I don’t think we’ve missed a day yet. Sometimes we don’t manage our several hour long sessions on Skype, occasionally it’s just a quick Viber conversation or text chat but we always communicate somehow.

True, some of those times are like hospital visits, neither of us quite knowing what to say, that’s the problem with the distance, those are the time when we both really just want to hug but, how does that communicate over technology?

Of course, I’ve totally no idea what Dennis sees in me. I’m stressed more often than not, I rearrange our slots online, cut them short, invite the family along, take him someone else for the chat. I’ve ballooned, I think, since he first saw me. When I get stressed, I eat and, when I eat I get bigger ‘almost’ everywhere! But, I do love him, there is something special about Dennis. Beyond his good looks and his amazing smile he is just this amazing person with a great sense of humour, some honest humility and vulnerability. He’s got confidence where it is needed. He’s intelligent .. wait, I am going to start repeating myself here! No one could be more proud than me when he sings, I don’t care if he wins the 2017 XFactor or never does more than sing in the shower, as long as I can hear him then I am happy. Of course, the more happy Dennis is the happier I am.

We’ve got some struggles ahead the two of us but, as Dennis said, together we can do it.

Even on my most stressed out days, one smile from Dennis and I know I can cope.

I am both excited and scared of finally meeting … at long last! (when we do)

Just now I can cope (just) not being physically in the same place but, once I know how it feels, wow, how can I walk away from that?

No way can I imagine a future without him and the future with him seems to very clear to me.

Yes, this is a little embarrassing maybe, soppy, maybe but some people worry they will never find someone to get old with, I really, really feel that I have and I don’t ever want to forget how blessed I am.

<3

I am amazed
When I look at you
I see you smiling back at me
It’s like all my dreams come true

I am afraid
If I lost you now
I’d fall through the cracks
And lose me track in this crazy lonely world

Sometimes it’s so hard to believe
When the nights can be so long
And faith gave me the strength
And kept me going on

You are the love of my life
And I’m so glad you found me
You are the love of my life
Baby put your arms around me

I guess this is how it feels
When you finally find something real
My angel in the night
You are my love
The love of my life

Exhausted

I feel guilty because I didn’t get to see Zoey today. It must be so scary for her and difficult to trust anyone. We’ve all but told her she’ll be coming home yet no one visited today. Of course, had we gone we’d still have had to leave her there and perhaps that might have been worse than not going at all, who knows?

Today I’ve been getting some help from a friend to put a stronger case for Zoey’s release should they deny her the right to come home by Monday. I knew most of it but, even so, having someone else write it all up and to act as a sounding board and come up with the same conclusions as me is comforting.

Today I passed on visiting the hospital as I’d not have been strong enough to cope if Zoey got upset. Yes, that’s selfish, I know this but I don’t want her to feel my nervousness as to whether she is coming home or not. Yesterday we all managed to be so positive and that’s how I want her to carry on feeling.

It feels like I am not likely to get completely over the bug I had for a while yet, I’ve felt a little feverish today on top of my cold, I really just want to go to bed if I am honest.

There is only one option to not coping and that’s giving up and I don’t like to do that, I’ve rarely got to the point where I had to and I don’t relish the thought of having to do it again, I am not in that mindset.

I am very grateful to all those who have been are remain supporting me and the rest of the family, it is much appreciated. It’s tough not just on me but on everyone who cares about Zoey not least Zoey herself.

Zoey Update 23 October

Meeting with the social worker today. There is stuff which is in the background it’s not appropriate to talk about in a public forum so, ask if you see me perhaps. Suffice to say, it might not have been so pleasant for the social worker to take the line she did earlier when up against 3 Williams!

We finally ran out of patience with all the estimates running into months of how much longer she would spend in hospital and I today gave a notice of intent to discharge her.

They have until just after midday on Monday to respond.

My guess is, if they have any common sense left, they will approve the discharge, if they don’t then I take it to tribunal. We need to keep Zoey safe and we can’t protect her whilst she is in a place for people with mental illness which she clearly does not have.

Zoey sobbed her eyes out earlier saying she wants to come home, she is coming home ASAP!

Appeal for Zoey

URGENT – Our family and Zoey needs your help

It seems that we as a family are being blamed for causing her current condition. In a recent report with regard safeguarding it states that:

“Zoey was admitted to NGH in crisis –the risks of returning home are currently yet to be understood.”

It makes it clear elsewhere they consider there is a question mark as to her safety at home. Each professional involved with Zoey at every opportunity asks over and over what it was which triggered her situation at home. They are talking about potentially months of keeping Zoey at Berrywood whilst they investigate this. In my opinion, they know she shouldn’t be in an Acute Mental Health hospital but don’t want to admit their mistake. They want to justify their decision by claiming it is for safeguarding reasons.

What do I need you to do?

I need only those who know how much we cared for Zoey here, who know us as a family and who know how loving and caring we are to write to Berrywood Hospital. I understand that I am open this up to those who may seek to destroy this family but I ask that they remember that we’re talking about Zoey here, please don’t make up nonsense to stir up trouble for the rest of us sacrificing her in the meantime.

The contact Details are:

Berrywood Hospital
Berrywood Dr,
Northampton
NN5 6UD

Attention of Dr Mann (Bay Ward)

For those who have read the blog entries, you will know the full extent of what has happened the past few months. Others might just know how they feel about us as a family and whether we are suitable to send Zoey home to. Anything you feel it is important to share with the Dr is important. It also helps if you describe the Zoey you perhaps knew from personal experience.

Please share as you might know someone on your friends list who isn’t on mine who might want to help too.

Thank you

Zoey Update 21 October – Why oh Why?

Why do Doctors and managers and hospitals worry more about covering their own backsides than they do about their patients?

Hell no, let’s go back a bit … I’ve been trying to speak to the consultant treating Zoey for weeks. I make an appointment and he doesn’t show up. Today I finally get a meeting where he and I can talk so I expect it is me and he sitting down in a room and having a chat. Clearly I forgot how these things work. There was him, his trainee, the ward manager, the LD coordinator and me in a conference room.

Do you know, as a Carer how you feel like there is them and then you? Well, no, of course you don’t unless you’ve been there but that’s how it was. No one was in my corner and, by ‘MY’ corner I mean Zoey’s. The overwhelming feeling seems to be that clearly we were the cause of this problem, something must have happened at home. That if we were able to cope then she wouldn’t have been sent to hospital. I obviously, well, obvious to me, pointed out that we’d managed to cope just fine for 24 years but something this year changed and it was more than likely the urine infection. They acknowledged that urine infections can cause such issues and reactions BUT … you will love this one … young women her age if they are looking after themselves properly or looked after properly rarely get such infections, clearly she wasn’t cared for properly and they need to know she is safe.

At this point it would be fair to say that I was feeling the need to sign myself into the hospital because they were sure as hell making me mad!

I asked if they could identify a single recognisable mental health issue with Zoey that they were certain were not part of her disabilities, they couldn’t. They queried that she might be depressed but they couldn’t be certain, it was just something they wanted to rule out! I’ll get back to that one!

They said that they need to wait until Zoey is able to engage in the process, voice her opinion. I asked what they knew about Zoey that made them believe that she was going to start doing something there which she’d not done for the rest of her life to date? That was news to them apparently, they were under the impression that she was able to engage in conversation. I did point out that this was glaringly obviously why they should have spoken directly with the family when she was admitted and not waited over a month to do so, they agreed. I mean, they actually agreed they would have found it useful. I mean, who the absolute **** is running the place that knowing this they still didn’t do it despite my making two appointments previously?

The Doctor queried autism, perhaps aspergers and said this was something else they needed to explore, I agreed, absolutely we do but I asked whether they routinely got patients in their acute mental health hospital to be assessed for such things or whether they would more likely happen at home. He replied “fair enough, I see your point”

It seems to me they just don’t get that Zoey actually could be OK at home. That everything which needs to be sorted out can be sorted out at home, it doesn’t need to be in an acute mental health hospital where she is picking up on so much negative behaviour.

The anti depressants … they will take about two weeks to see whether they are doing anything. The doctor acknowledged that the side effects, if there are any, could be quite upsetting for Zoey so … how about we take an already really scared person with learning disability and give them drugs they might not need which could well scare them anymore, yeah, excellent decision.

Bottom line is, I’ve told them that week starting December 2 I am going to officially challenge the section 3 and unless they can have some evidence of a mental health problem by then, despite what they believe this allegedly awful house is for her, she’s coming home!

For the record, no, as a parent you don’t cope with this, not like some people cope. You bounce along the bottom of sanity trying to carve a path through the madness you have to deal with.

Of course, I am not actually Zoey’s carer any more, I got sacked by the government because she went into hospital! I am broke and likely to get more broke!””

Zoey 20 October

I think the visits with Zoey are getting better. I am quite certain her remaining in hospital is a mistake. It’s a mistake which is going to see her degenerate loads if we’re not careful. She’s seeing too many things she shouldn’t see, picking up too many behaviours from other patients that she doesn’t understand.

As far as I can see, there are totally no mental health issues with Zoey at all now and it amazes me that the consultant on the ward has not picked up on this already. Those nurses who deal with her on a regular basis know it already so, why is she still on a section 3?

I am seeing the consultant tomorrow, if he turns up. This will be the third arranged meeting and the man has failed to attend the first two.

I’ve put in an official complaint highlighting my concerns to the Care Quality Commission who oversee such places. I don’t expect them to have acted before Zoey is released. I used the word ‘released’ as opposed to ‘discharged’ because that is the nature of a section 3, someone cannot choose to discharge themselves, they have to be released from a section 3 order.

I’m not seeing Social Services until Friday, that is the earliest I could arrange a meeting. That’s a little crazy seeing as if my plans for her release go through, she’s going to be home next week with not a lot in place for her.

As anyone can see from the picture, drinking isn’t an issue, if I’d taken a picture of her scoffing her McDonald’s breakfast after already having had cornflakes and toast this morning, you’d know that eating isn’t one either. She smells OK so is obviously doing some sort of washing, I suspect she’d do more at home as it’s more private. In case you’ve not seen inside a Berrywood room, and why would you have, these is no privacy at all. Nurses walk in and out of the rooms as they want especially with someone like Zoey who isn’t talking to them. The toilet door is so low it’s easy to see over the top of it, indeed, unavoidable. That cannot be good for Zoey especially as we’ve been trying to teach her about personal space.

Certainly it is fair to say I’ve not been happy about the care she’s had there, simply not good enough for all the reasons you might have read about before. The sooner she comes home the better.

Zoey 16 October

I spoke to the people at NHS Commissioning who had an all day meeting on October 14 with us and various others. She was meant to call me back with the conclusion late on 14th or early on 15th. No great surprise that she did neither.

Eventually I called them and discussed the issue. I discovered that Zoey has a named Social Worker who was meant to turn up on 14th and didn’t because Social Services decided that Zoey’s urgent case should be allocated to a social worker who was on annual leave until next week!

Next I called the hospital to complain, spoke to the deputy manager and he has agreed to arrange a meeting for me to talk to the consultant on Monday. This consultant has, apparently, said many times his need to meet with the family which is strange as I’d arranged two previous meetings with the man and he didn’t show up.

I’ve also put in a complaint about the lack of care at Berrywood Hospital to the Care Qualities Commission. I should imagine that won’t go any further than filing tray 13 but I have to try. Seems that two years ago on the same ward as Zoey, a patient hanged herself. She was known to have suicidal tendencies and even handed over a belt to staff as she herself was concerned of what she might do. Sadly, when they did handover this bit of information wasn’t passed on or recorded any way. During the next shift she was found dead hanging by her dressing gown chord. The issue was clearly highlighted as one of consistency and communication and the hospital assured the courts they were implementing changes. It seems they have gone back to their old ways.

Zoey has been attacking another patient. One member of staff believes it is because the lady doesn’t know her boundaries and keeps getting too close to Zoey and won’t stop talking. Has that filtered to anyone else? No, of course not! Zoey is now on 24/7 watch to protect the other patient. Take the easy route rather than be there to monitor the situation, learn from the observations and act on them, crisis management at its very worst.

I cannot do anything now until Monday, no one wants to take responsibility on a Friday, not before their weekend. Thankfully, next week remains free (so far) so I should be able to do all the things I need to do.

The Government & Immigration

For me, immigration is not the issue top of my agenda other than how difficult it has become to genuinely get the person you love into this country. I guess that’s the opposite of what the Tories are about though.

If the people of this country have any issue with immigration at all it has nothing to do with the individuals settling here from other countries or even coming here to work, send money home and then eventually return to their European nation.

No, what people get really angry about is foreign nationals doing what the British did to other countries for years. They come here, they can’t be bothered to use our language, have no interest in our laws and customs, challenge our values and faith and rather than do what their country of origin would do and give them an official slap, we try and change the our country to accommodate them.

Being in the UK is a privilege, no one should have the right to come here and complain about how we do things any more than idiotic Britain’s have the right to go to places like Saudi Arabia, ignore their laws and think they are hard done by when they get punished in accordance with their laws.

This is our concern with immigration, terribly sorry if that doesn’t agree with the current Government policy of blame ’em all for everything … what’s the matter, are there not enough people left claiming benefits to blame now for policy decisions?

Me - October 14

Yesterday was difficult for me. It was mum’s birthday, she’s have been 82 but she died 29 years ago at 52, that’s younger than I am now and shows, we never do know how long we have with someone.

When someone dies we never really do get over it, we just learn to live with our new reality. We often ask ourselves what life would have been like if they were still here. I know for me, with mum, I felt she never really met me. Not the real me that I am today. She only knew this scared screwed up version of me, the one who only ever did what he thought he was meant to do and had no idea I could do what I wanted to do. Her reaction might have been totally negative but, I’d have liked to know.

Not many people who know me now knew mum and they may think to themselves, it’s 29 years, get over it. But, mum didn’t know my children or my grandchildren either. All the pleasures I have enjoyed she missed out on. She knew Jermaine was on his way but that’s as close as she got.

On another note, earlier on today I was chatting to Dennis, like I do, on Skype, he was tired and when I came back from getting a coffee he was asleep on the screen. It was like heaven just sitting here watching him sleeping, when he woke up he smiled and, well, it was one of ‘those’ moments that I wanted to last forever.

I am really nervous about the future, there are going to be so many changes and, easier as it is to just ride with it I want to take control of this, if I can. I need to live my life the right way, for me. For the family too but being honest about what I need, how I am going to move forward.

Prayers are said regularly, it helps me. Is it stuff just working out or am I getting some help? I don’t know, no one does but, it’s a nice thought that there might be some intervention going on.

Zoey October 14

I am quite convinced now that we’ve turned the corner with Zoey. I am going on my gut here but I feel she’s not going to revert back to how she was once she’s home.

Speaking of home, I don’t think it will be long. I shall know more tomorrow possibly but all of us now feel that keeping her there does more harm than good. It’s also apparent that some of the patients there are not the sort of people Zoey should be mixing with at all.

We were sat in a meeting earlier when this very well dressed lady came in the room and sat down. Long story short, turns out she’s a patient. She was adamant she was not leaving. We eventually had to leave the room ourselves whilst the heavy mob dealt with her kicking and screaming. It was quite scary and intimidating how cold this woman was. She looked like someone who would think nothing of shooting everyone in the room given the chance.

Anyway, we need to wait see what is going to happen but I feel optimism is appropriate.

Don’t get carried away, I also think I’ve got an uphill struggle getting the sort of package in place from Social Services that Zoey is going to need. It’s a long road yet but, hopefully, by just the other side of Christmas we might have it all in place.

Zoey 12 October

It seems fairly obvious to me after visiting this morning that Zoey doesn’t want to be told what to do. She’s an adult and, let’s face it, who really wants to be told what to do all the time?

A LD nurse was trying to get her to use a speaking mat to communicate. She is missing the point, it’s not just that Zoey doesn’t want to talk it is that she doesn’t want to interact at all. So, it’s not that she doesn’t have the ability to communicate, she doesn’t have the desire to.

I am not at all sure she will talk when she comes home either, whenever that might be.

The worrying thing is, the Zoey which is emerging may not be one who would fit in with a family environment any longer. In a place of her own, if she chooses not to do things like washing or communicating at all then it isn’t an issue, she doesn’t have to much like where Jermaine is. There is no point pushing him to achieve anything as it isn’t going to happen. Zoey is now like that. To get her to do the basic is still taking a fair amount of effort I think. More than one person is insisting that she get on and do things like getting washed so it is happening. I don’t think it’s overly successful despite what they tell me as her hair hasn’t looked cleaned and brushed in days. To put that level of care into the home situation is going to be costly and very intrusive for the rest of us as they effectively turn the house into a care home.

I want Zoey to come home, she’s still one of my girls and I need to be there for her, on a practical financial level, I need her to come home but, right now I can’t imagine how it is going to work.

This morning, thought I got loads of smiles, she made it quite clear where the boundaries are. Anyone trying to get her to do something she didn’t want to do got an evil glare. She stormed out at one point only return a moment later realising that everything she wanted to do was still in the room she left. I did feel, personally, like I was somewhat not needed so left. I was hoping there might be a reaction to my leaving but apart from a glare which I couldn’t translate, there was nothing

Zoey Update 11 October (Sunday)

Another good visit with Zoey earlier. Took her iPod into her, had to lend her my skull candy headphones. Also I drove to Milton Keynes and collected an IKEA catalogue for her to look at.

She got even happier when Dennis came online. It’s annoying that it’s near impossible to use Skype video on a phone but, better than nothing.

With the continence we’re having maybe one accident a day now and Zoey is making an effort to get to the toilet but not quite getting there, I think she’s still feeling the after effects of the UTI she had.

She’s still not talking but I think that will change when she leaves. Cleanliness is still a slight issue but she’s getting there.

What worries us is that they are still referring to her being there in months time. We’re thinking more a week or so. The reality is, the issues she went into hospital with are now resolved. We need tweaks on the hygiene and continence but I am still quietly optimistic about those happening soon. But, will they recognise where the mental health issues have stopped and what they are left with is ordinary learning disabilities Zoey? We’ve got this fear that she could spend the rest of her life in an institution because they are not well enough experienced with LD to see that LD is the only issue.

Zoey Update 10 October

Look, I don’t want to be overly optimistic here so let’s be cautiously optimistic.

I had a really good visit with Zoey last night, a real turning point I thought.

We had some serious interaction and for the first time she said she wanted to come home. She didn’t just say it she really said it then hugged me sobbing for around 10 minutes.

There was a worrying aspect to the visit though. Zoey isn’t really talking except when she gets really emotional. I felt she wanted to talk but that she was stopping herself. Rather than tell or ask her to speak I did a series of questions with nod or shake head answers. I am going to simplify what went on for about 15 minutes. In a nutshell she was scared and said that someone there has told her she isn’t allowed to talk. I was getting to the who when she couldn’t answer any more and got very upset. She certainly gave me the impression she was scared. Obviously that’s worrying and I did report it to a staff member. I intend to do so again to a higher level staff member.

Today was another mostly good visit, certainly between me, Sean & Zoey. Annoyingly we became aware that once again no one was watching Zoey or taking an interest in her needs. I discovered she was still in pads despite being told they wouldn’t be used any more. Further, I noticed that the pad seemed to have leaked. I asked Zoey if she was comfortable like that and in a very relaxed way she said she wasn’t and we went to her room so she could use the toilet. Imagine my despair when I discovered she didn’t have a change of clothes there!

Zoey was quite upset because she obviously did want to use the toilet but couldn’t.

I asked staff members until I eventually found someone who’d check the laundry, we discovered some of the clothes but a significant amount had gone missing.

What followed was an unpleasant confrontation with the head nurse. This nurse was trying to tell me that sometimes mistakes are made and it’s not unacceptable, I told her quite bluntly it was always unacceptable. She said that just because they didn’t check Zoey or look after her clothes or make sure she could use the toilet, that didn’t mean that hadn’t achieved anything. I retaliated with the fact that I’d never for one moment connected any such thing. I’d merely pointed out that our priority area of concern right now was Zoey using the toilet and not wearing pads and asked why it was so difficult to concentrate on that one task, how comes they couldn’t recognise in hours what we’d discovered in minutes? There was no answer, just a shrug.

So, complaint again tomorrow and I am so getting sick of complaining all the time. I should be able to relax knowing my daughter is somewhere safe and being cared for properly.

The sooner we can get her home the better.

I obviously had to replace the clothes, that’s £112 it cost me, money I don’t really have as the government has taken away my income of course because Zoey is in hospital and, when someone is in hospital, no one at home can legally be caring for her!

Zoey Update 8th October

Nothing has really changed.

Ironically, the two things we’re waiting to get resolved are both things which were not an issue when she went into hospital!

Legally she’s on a Section 3, for those who don’t know, this means that until such time as she has improved she is imprisoned for her own good for 6 months and then indefinitely subject to reviews.

It’s not a nice thought but it is the reality. If she gets better then she can be sent home. Right now I just don’t know ‘if’ she will get better. They know she needs speech therapy and continence advice, there is a significant waiting list for both. So, in the meantime, they’re just hoping the situation sorts itself out as they are not really doing anything except babysitting from what I’ve seen.

Social Services have apparently allocated her a new key worker to assess her needs and place together a revised home package, they have so far not managed to contact me with this information though.

A Selfish Post – please read and forget

I’ve effectively been a single parent now for 16 years. I’ve had partners in that time but, rest assured, the responsibility and emotions remained mine.

Raising kids is always tough, fun and rewarding but not easy.

I feel like I made a lot of mistakes, I mean, way too many I probably had no right to make.

I took too many holidays without the children. I considered they were well looked after but, in hindsight, that probably wasn’t true.

Whatever caused Jermaine’s issues, I don’t think I dealt with it well enough, I don’t think I got the balance right between his needs and the needs of the other kids. I decided way after the event that he needed to go into a care home and even then I went with the wrong care home and he had to wait months for me to get it right whilst being neglected and abused because of that in the meantime.

Of course two of the kids would rebel, go off, make mistakes and, of course I was totally oblivious to it. I was so smug that I’d done a good job of raising them I couldn’t even in my wildest dreams imagine I could have caused so much damage to them that they’d get themselves into some of the bother they got themselves into. I can’t blame them for that, it was my responsibility to lead them down the right path and I failed in that.

Since that started falling apart, with the Javis situation, money issues and so on, I feel like I have just stumbled from one cocked up bit of parenting after another. I mean well, I think I am doing the right thing for the right reasons but, it doesn’t seem to make any difference.

I’ve got to ask myself, am I doing it as a parent trying to actually get it right for a change or, am I doing it because I have some strange fantasy ideal of the ever loved parent who is always loved and admired no matter what? Looking for that perfect supportive family who won’t have negative feelings toward one another as time runs along? I don’t know if I am honest!

I spent too much of my younger life, as a kid and well into my 30’s looking for approval, someone to tell me I was getting life right, achieving, that I was respected and liked. More often than not, the opposite was true.

There was a lot of rejection, I considered myself, because this was how I was treated, very much the black sheep of the family. The outsider, the different one.

When Mum died, nearly 30 years ago now I was a mess and I had to cope and get on with it because I did. Hell, it effectively rendered me homeless, I was 3 weeks away from getting married, a child on the way, working in London, dealing with all the ‘death’ stuff and, being made totally aware that I really wasn’t that important, that really it was all about my Nan and, in a way, I got that, I do and did but, it was like that because for this one situation, two sides of my family couldn’t put my difference aside and get along, just for one day. That was maybe the first time I really got just how unimportant I was as an individual. Until then I had just existed as part of a package, I was in the lives of others because my mum existed, once she didn’t then I stopped mattering to anyone, that was quite tough.

Ever more apparent at the time was the fact that I was gay. I felt getting married was a huge mistake. I felt OK about it when mum was about but once I had to stand on my own I suddenly realised that perhaps I should have been making choices for me because no one else gave a damn anyway.

Too late, I got married anyway and I tried really hard to make that work. I did too for some 14 years, that’s quite good by any standards. I didn’t bank on two disabled children though.

Losing Jermaine at just short of a year from a normal little boy into a kid with very real problems was tough and, of course, instead of being supportive, family either rejected the idea that there was a problem at all or they decided that somehow I was to blame for it or their mum was which made me to blame anyway because clearly I must have allowed the situation!

I felt totally humiliated having first Jermaine and then Matt on the ‘at risk register’ because I’d stupidly gone to work leaving them in the care of their mother and not getting home quick enough to stop a situation!

Oh, that job, made my life hell for having to keep going home to care for my own kids, I lost it eventually. Not before I went through months of abuse and bullying there.

After mum died I didn’t get to hold to much, actually, I got a necklace of hers, I wore it most places. One of the few times I didn’t the house was burgled and it was stolen. I know it wasn’t how it was but it felt as though someone knew what it meant to me and took it just to spite me.

One one occasion, after mum died, my dad asked me what my issue was with his wife. I told him that she’d gone out of her way to screw up my mums life, that she’d screwed up my wedding by her selfishness and that there was probably part of her who would like to see nothing more than total domination in his life by her and her daughters. I was punched and thrown out his house and told that I was a complete failure in his eyes, I’d never amounted to anything and never would.

That hurt but, I knew it anyway.

When I realised instinctively that there was also an issue with Zoey at 6 months I cried so much whilst cuddling her in her room.

I spent most of the first 10 years of marriage feeling terribly isolated. Family, blood family had all but rejected me, I was an in law to my wife’s family. They were lovely enough but bottom line was that I was a man with no real idea how to deal with children whilst I knew I was the one who did the majority with them.

After that decade I came out to that side of the family, not my own, it didn’t matter to them. They didn’t care anyway what I did or who I was. 3 years later I started balancing being gay with raising the kids. In 2000 I took over totally with the kids. My wife suggested Jermaine and Zoey go into care as I’d not be able to cope.

I did cope for another 5 years with Jermaine but I left it too late, the damage to the other kids was already huge. I’d done my best for one I could make no difference to and not done enough for the others.

Letting Matt go when I did will always be a low point in my life. He was like he was because of my decisions.

The lies and deception which lead to the Javis situation I also must take the blame for. What sort of parent raises their kids to lie to them about something so important? If I’d been there enough then perhaps I’d have had more respect shown me?

Even then I tried to make things right by making them more wrong. I invested too much time and energy in the scumbag which I should have put into my own kids. That mistake cost me dearly emotionally and physically and in over £2500 of loss!

One of the classics of the modern era, the last 7 years or so has been the shit which got spread about me, lies of course but enough people got to hear it to believe it and, as everyone ‘knows’, there can be no smoke without fire! So many, too many people now ‘know’ the sort of guy I am and yet they don’t know me at all, it’s a horrible feeling knowing others gossip such horrible untruths and nothing can be done about it.

I have been called a ‘dick’. ‘Bell end’, selfish money grabbing bastard’ and a great many more so many times I lost count, it hurts every single time because it isn’t true.

Then there are the friend, the friends I would do anything for, who I’d drop everything for who blanked me when I asked for help, people I thought would understand. That actually hurt loads because, well, because they did understand and chose to do nothing, it hurt all the more.

Getting cheated on by someone I cared deeply about and more than once, that made me feel stupidly low, it also made me vulnerable and cost me a lot of money whilst someone else manipulated the situation to their own advantage.

Losing my best friend Tony to cancer was awful. That man completely turned my life around. He was totally my rock, my one constant, I felt so alone afterwards.

Up to date and I feel guilty still for not visiting Jermaine more often. I should, I know I should but, at the same time, I can’t really deal with it. I feel so helpless to help.

I met a guy online a few years back, I thought it was all real, I sent money, I went visited, I sent more money, I got into a lot of debt I am still not quite out of and he turned out to be no good, was just using me for the money.

There was that, the cheating ex husband, the manipulating Javis, the charity which totally humiliated me when they realised they’d made a mistake allowing a volunteer so much influence and many more such things. Fair to say, I’ve got trust issues!

4 months ago I met Dennis online. So many people think it’s a joke, they say distance relationships are not serious that, because I got ripped off before it’s all going to happen again and so on.

In my heart I know this isn’t true. I do love Dennis and trust him totally. He’s never given me any reason not to and I am sure he never would. I hate that each time we cannot talk or we get online late (which happens rarely), there is a voice in me asking whether he doesn’t really love me or not! I really hate that because I know it’s not true, I hate that insecurity caused by other people in me.

Now I have no idea what is happening with Zoey, there seems to be no cause but I’ve all but lost her. She was in my care but now she’s on a section 3, held against her will in a secure hospital. It’s obvious all those inside there are pointing the finger at me, I know some people quite close by are pointing the finger at me that, somehow I have created this. I keep asking myself the same question, what did I do wrong?

One of my children is in that place on their own when I should have been there for her. She’s hurting and I am no use.

I’ve lost all my benefits now, virtually nothing coming in. I should think about working but I don’t want to accept that it’s a done deal with Zoey, I need to think she’s going to get better. I cry maybe too much trying to work it all out, I pray so much and I know others do too.

Just a few months back the future looked so promising and yet now I feel I got to really fight for it and even then, my dreams might not come true.

To add to my feelings of isolation, Sean’s sister is about to die, I feel he’s handling it in a way which is going to make it really difficult for him to cope afterwards but, trying to help is causing arguments. In the meantime, Daisy is taking the brunt of my frustrations and anger and she is struggling to cope unsupported too, what a mess!

I notice Sean’s sister has one of the crowd funding things set up for her, I remember ‘Walter Jnr’ from ‘Breaking Bad’ setting one up for his dad with his cancer.

My money is gone, I’m in debt. I need to get things back on track and soon, actually, I need about £70,000 to make my money worries go away https://www.gofundme.com anyone? No, I don’t suppose anyone would either set it up or donate to it.

I’m one of those guys who is only useful when they’re useful and disposable otherwise.

I’ve got some great and very real friends but, I am also one of those guys who doesn’t like being a burden on someone else!

I know, I am the cause of my own issues just so much of the time.

Anyway, an open prayer:

Please help my Zoey get back to her old self. I need to try and get things right for her.

Please help Sean get through his issues, help him to cope the right way through one his toughest times so far

Please help Anne as I know she’s struggling and help Matt too because he’s as dumb as me and will bottle shit up for way too long.

Help Daisy please with her almost constant pain and her piggy in the middle situation.

Please take Kelly soon and remove her pain from her.

Please also help Chris get to do some of those things he dreams of.

Please, if me and Dennis are meant to be together, help me find a way without causing me so much stress I’ve got no energy to enjoy it.

Please, look after all those and bless them the ones who say prayers for me

Zoey October 4th

Me and Matt went up to see her.

She’s still not talking. If she gets really angry she will no doubt say something but it’s obvious that in everyday interaction she is forcing herself not to talk.

In every other way she is interacting. Body language and expression are there and she cannot hold on to her laughs.

She’s reluctantly having her injections for the infection.

She’s still not really cooperating with hygiene but it is being done.

Food and drink seem to be OK and she has a good colour.

For some reason she is still in pads and they tell us it will take a continence expert to make that change … I’d have thought removing the pads from her room and giving her knickers instead would be a quicker way but, what do I know apart from the fact that I already potty trained her once!

So, apart from the not talking which I know really bugs Matt, she seems to be well on the mend. If it turns out the UTI was not the cause of all these problems though we have an issue. Even if we get her back, who is to say it won’t all start again at a moments notice?

I am at a point where I am not stressing about it. I can’t change anything, if I become very broke then that’s what happens.

I’ve noticed that I now have a considerable amount of grey hair coming through, all part for falling apart I guess, we all have to go there at some point. No one seems to believe I’ve not been using colour for years anyway!

Zoey Update 02/10

Very brief this

After numerous complaints, all upheld, a full time LD nurse has now been put in place. Zoey starts a course of antibiotics today.

She is eating and drinking regularly and sleeping OK.

She is also communicating a lot more.

Had a slight strop earlier, she still argues she doesn’t want to get better or have anyone look after her but, well, let’s see how she is once the UTI is sorted.

She will be on a Section 3 next week but staying where she is.

A Cold

Not ‘Man Flu’ or any type of flu, just a cold but, all the same, rather annoying and unpleasant.

I was woken up the other night with a nose bleed, hey, don’t jest, Attila the Hun had a nose bleed in his sleep and it killed him!

Right now I am amazed at the production rate of unpleasant gunk in my head tubes, I am already on handkerchief number 3 of the day and it’s not 11am yet.

My eyes, wow, stinging much!

Aching? Yes, I’d say that’s sums up most of my body.

Headache, yep, medication not touching that.

Mega tired. I am out this evening so, need to get some more sleep.

Appetite disappeared somewhere, not up for eating just yet.

My farts really stink, it’s embarrassing!

I am hot, and cold, and hot again.

Can’t really hear much or smell and seeing is a little vague.

So, like I said, a cold. Unpleasant, annoying but I am not dying, life goes on and in a few days it will be gone.